IOM Meeting January 27, 2014
In-Person Comments by Jeannette Burmeister
Hello. I’m Jeannette Burmeister and I’m an attorney.
I’ve heard some people at HHS are confused about patients’ deeply-felt opposition to your project. Let me explain in simple terms why:
- HHS hijacked the federal CFSAC recommendation and ignored an unprecedented and impassioned request by 50 international M.E. experts to cease and desist
- The majority on your committee are non-experts. Insanity!
- HHS insured bio-medical research will be not be funded or replicated and yet ordered an evidence-based review. You are hurtling down the psychological rabbit hole, repeating the Gulf War Illness anti-science debacle.
- HHS hired an institution without experience or authority to develop case definitions.
- An excellent case definition, based on science, already exists and the experts endorsed it.
- The IOM has a fatal organizational conflict of interest. I have filed a complaint with the Office of the Inspector General. A formal investigation is under way.
- HHS has broken federal law as to FOIA compliance. 2.5 weeks ago, I filed a lawsuit against HHS and NIH in U.S. district court.
- To circumvent competition rules, HHS moved from seeking a standalone contract to issuing a task order without a clear scope, violating umbrella contract terms.
- HHS issued misleading statements about the nature and terms of, and parties to, the contract.
- And finally, hundreds of thousands of patients’ lives were ruined or ended by a federal consensus definition in 1994. We have long memories. Patients are furious and alienated by what can only be called state-sponsored bullying.
Given your time frame and the meager “budget-dust” sum provided to you, not even a thorough literature review is possible. Do you really expect anyone to consider the definition you produce to be science-based? Everything about this is lose-lose.
You may attempt to serve as oracle of the biased and obstructive NIH/CDC, but your conclusions will be rendered meaningless soon enough. Academic scientists are closing in on the cause of this disease. In due time, your consensus “fairy dust” will be headed for Ripley’s “Believe It Or Not”—next to the entries about the earth being flat and the sun revolving around the earth.
My husband, who is an attorney with the world’s largest law firm, and I will not hesitate to bring additional lawsuits. We are supported by thousands of patients who are ready to fight you at every step, in federal court and in the court of public opinion.
The following are comments I had initially planned on giving, but I completely rewrote them the day before the meeting and gave the comments above instead. But the original comments have some additional points, so I’ll post them here, too:
Please know that nothing I have to say is in any way personal to any of you.
For patients, this is the fight of our lives and if this sounds overly dramatic to you, then this may indicate that you are not fully aware of the irreparable harm you are about to do. I respectfully suggest that you research the disgraceful IOM history with Gulf War Illness. Because if there is one thing I am sure of, it is the fact that this committee will psychiatrize this disease by endorsing antidepressants, psychotherapy and exercise, as the IOM did for Gulf War Illness. Your report is a foregone conclusion given the IOM’s issued opinions about our disease in the past, which create an organizational conflict of interest that is currently the subject of a formal investigation by the Office of the Inspector General.
I am sure you eight non-expert panel members are all accomplished in your area of expertise. I am not questioning that, but I am reminding you that you are not experts in THIS disease. The Gulf War Illness committee members probably had similarly impressive credentials and good intentions, but we’ve seen the disastrous results of their efforts. The foremost experts for this disease have stated that this effort will harm patients. And yet, here you are, not having treated a single patient with this disease or researched the disease in any meaningful way or in any way at all. This is not a purely intellectual exercise. It has taken the experts decades to accumulate their expertise by treating and researching this disease and you are not going to become experts capable of producing an accurate definition by reading about this extremely complex and very unique disease for a bit more than a year in your spare time. What you have been asked to do is simply not feasible to do competently no matter how much you might want to believe it is or how good your intentions are.
I’d like to suggest to ALL committee members that you are being played. This study is a set-up because it is designed as an “evidence-based” review. HHS knows full well that replication studies of bio-medical research of this physical disease are basically non-existent in the absence of government funds for them, whereas research (quote, unquote) of the alleged psychological aspects or of coping mechanisms abounds thanks to HHS funding. For example, ask yourselves why Dr. Unger of the CDC is kicking and screaming resisting a 2-day exercise test, despite overwhelmingly strong research by Staci Stevens and Dr. Chris Snell establishing the test as a very reliable biomarker. I bet some of you have never even heard of Stevens and Snell. That right there should give you pause.
I am asking you to go home tonight and really think about whether you could live with yourselves if you did to us what the IOM has done to Gulf War veterans. Because if you go forward, you will be accomplices in a process designed to do just that and it WILL stay on your conscience for the rest of your lives. Patients are watching and we WILL hold you accountable if you proceed down this path. Do the right thing and refuse to be part of this diabolic plan to, once and for all, bury this disease and its patients.